do not waste local know-how

When the Department of Health decided to review the arrangements for specialised commissioning, it gave the job of consulting patients and carers to the eight regional specialised commissioning groups. London RSCG decided to develop a strategy for patient involvement across the whole range of specialised services.

There was a problem, however.

Many groups dealing with rare diseases and conditions are, by their very nature, small and lack resources.What is more, there were only three weeks for the London RSCG to feed into the DoH national review.

As it happened, the College of Health was about to circulate the 2,000 or so organisations on its national self-help group database, so we offered to invite these groups to take part in the consultation and register an interest in future involvement with London RSCG where appropriate. And, given that this was a once and for all opportunity to contribute to a review that would affect the availability of highly specialised care for thousands of people with rare diseases who have never been consulted before, we extended the invitation to all the groups on our database, not just those in London.

The complexity of a subject which even primary care trusts are still battling to get their heads around, and the somewhat arcane nature of the questions being posed by the DoH, did not exactly help. So we tried to make things easier by including a one-page briefing on specialised services, how they are commissioned now and what changes are being planned for the future.

In the circumstances, the response was gratifying.

Seventy-three organisations wanted to be involved in London RSCG's patient involvement strategy - to comment on proposals by post or e-mail, to attend meetings and even to take part in visits to services.

Fewer (31) organisations attempted to respond to the national consultation. Some said they would do their best but would need more time than the current consultation allowed for.

But it was not all doom and gloom.Many organisations were at pains to point out that they themselves provide a range of important information, advice and support services for people with rare diseases. They wanted to share experience, expertise and knowledge of what constitutes good practice with health professionals as well as with commissioners. 'Charities often exist to plug the gaps in mainstream provision - we shouldn't just be involved in planning services, but also in delivering them.'

Would-be commissioners of specialised endocrinology services - and this includes all eight RSCGs since a recent report suggests that none has yet made provision for these - might want to know that the Society for Endocrinology has data which suggests that if you have acromegaly treated surgically in one centre, the cure rate is 90 per cent, but in another it is 40 per cent.

1What did become clear, however, is that consultation with patient groups on specialised services doesn't really work if done region by region.

For some diseases, such as cancer, there are large national charities which have their own regional structures, but for many rare diseases there will only be one organisation and it is largely a matter of geographical accident where it is based. For example, a trust for people with spinal muscular atrophy is based in Stratford-upon-Avon, but its members are spread throughout the country and most of the specialised services are provided in London.There are similar examples across the country.

Obviously it would be counterproductive for all eight RSCGs to consult such groups separately, and even more absurd in the future for every PCT to do so.

There is an urgent need for some kind of central co-ordination to ensure that the expertise of patient and carer groups is tapped into effectively, without inducing 'consultation fatigue'.

For now, London RSCG is wellplaced to develop its strategy for patient involvement with offers of help across the board, and we will be passing on the views of all the organisations who responded to the DoH.

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